News and commentary about Institutional Review Board oversightof the humanities and social sciences

Tuesday, May 5, 2009

DeGette Still Doesn't Get It

Representative Diana DeGette (D-CO) has introduced the Protection for Participants in Research Act (H.R. 1715), which would impose IRB requirements on all human subject research supported by the federal government or affecting interstate commerce.

As amp&rsand notes, this is the sixth time DeGette has introduced this bill. And I don't think that counts earlier submissions of similar bills by Senator John Glenn. None of these previous efforts went far, so there's no particular reason to fear this bill's passage.

Still, it is disappointing that DeGette has introduced this bill six times without understanding its potential consequences. Her press release states that “I think one thing we can all agree on in a bipartisan way is that we need to encourage medical experimentation but we need to do it in a way that both protects the patients and gives them informed consent about what they are getting into," as if the bill would affect only medical experimentation. It points to medical trials in 1999 and 2006 as evidence of insufficient oversight, and argues that "research is the key to innovation and discovery, including curing deadly disease." Nowhere in the press release is a hint that DeGette understands that her bill would outlaw most journalism, not to mention further inhibiting social science and humanities research.

Thirty-five years after the passage of the National Research Act, Congress still doesn't know what it has done.

Bonus question for Rebecca Tushnet's 43(B)log: Is the copyright claim on DeGette's press release--the work of a federal employee in her official capacity--illegal, or merely false?

Update 8 May 2009: A correspondent notes that the copyright statement is no longer on the site. If DeGette removed the statement in response to this blog, good for her. I have a PDF of the press release as it appeared on May 4, if anyone is interested.